One woman's quest for better health… living with lymphoedema

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6 months post-surgery — The Lymphosaurus Rex

Hey all, We have arrived at the 6 month mark following my Lymph Node Transfer in May. It just so happens that Dr Becker was in my neighbourhood this week (yes, random I know!) and we took the occasion to catch up and check out the fatty leg. Firstly, its still too early to see […]

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2 thoughts on “6 months post-surgery — The Lymphosaurus Rex”

It’s good to hear there are some surgeries that are working. I am traveling on Monday to Genoa to be evaluated by Dr. Campisi. I developed primary lymphedema tarda at the age of 58 three years ago. In the intervening time it has spread from my left leg into my abdomen and chest and has in the last month started in my right leg. Last year my chest was drained four times to relieve a collapsed lung caused by lymphatic chyle. I had surgery to seal the route to my chest and now it builds up in my abdomen and since August am being drained once a week of 5 to 6.5 Litres of chylous ascites. Campisi has seen my MRIs and says he has helped some people with my condition. I am not extremely hopeful because I have been told by two radiologists at UPenn that I have malformations in the nodes near the chyla cisterna, and in parts of my intestines that are causing the massive leakage and are probably congenital. I am not a large person and have always been healthy, active and slender. So carrying the volume of fluid in my belly and the weight in my legs has me in constant discomfort. I can’t call it pain, and in fact pain relievers are no help for the discomfort. No one in my family has this. I live in the Washington DC area, and none of the many doctors I have been treated by have ever seen this. They do their best to treat my symptoms. I am retiring in January from teaching as taking care of my health is consuming more and more of my time, and things seem to be getting worse. I do not know how this will end. I wish I could get in touch with someone somewhere in this world who is traveling this road too, because I just have no idea what to expect, and my doctors are reluctant to speculate.

Hopefully Campisi can at least give me a protocol that I can take home to my doctors here and perhaps make my life more comfortable.

If you hear of someone in my same boat could you put us in touch?

Many thanks, Kim Compton

On Fri, Nov 4, 2016 at 12:56 PM, My Lymph Node Transplant wrote:

> helensamia posted: ” Hey all, We have arrived at the 6 month mark > following my Lymph Node Transfer in May. It just so happens that Dr Becker > was in my neighbourhood this week (yes, random I know!) and we took the > occasion to catch up and check out the fatty leg. Firstly, its” >

I am so sorry to hear that things have not been going well for you ..i hope someone may see this and be having similar problems that you can both connect.. there are also many lymphedema groups on Facebook where you may find others with the same problems… often they are unaware as they have not been diagnosed properly .. good luck in Italy …i hope you find some answers that help …. take care

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Lymphoedema Awareness

I am writing this blog to keep a record of my Lymph Node Transplant in the hope of inspiring and helping others.
I wish to bring awareness to the issues of Lymphoedema so that people will better understand this very difficult and little understood health problem. We need more research and a brighter outlook for those with both Secondary and Primary Lymphoedema.
Items in this blog are to only be used in conjunction with a medical diagnosis and with a treatment plan specific to your needs. Please check with your lymphoedems specialist if you are feeling unwell or unsure about treatment and care.. MLD should never be used if you have an infection..Please share this blog with your friends and family... Thanks

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